Communication difficulties and different autistic profiles

On the Random Thoughts thread I said that I often don't feel like I belong here and many of you were kind enough to tell me my contributions to discussion are valued, but I think one of the reasons I don't feel I belong is that autism manifests differently in me to how it does in most others.

Many people here seem to AUHD, whereas I'm a Liminal Austic Thinker, this means I like to inhabit the grey areas of life, rather than the black and white of Binary Thinkers, or the fact driven thought processes of Analytical Thinkers or the High Energy, rapid paced emotional short hand loving AUDH people.

This difference in cognitive style makes it hard for us all to communicate easily, it's why I don't get emojis and others love them and are quite happy to post long streams of them that mean loads to those of the same cognitive type, where as I just look at them and think Eh? Of course not being able to see them properly even with my glasses dosen't help either. I need a longer form of commuication, not short forms of text speak and emojis, especially when theres an emotional depth to what people are communicating, I don't understand memes either, probably because I don't inhabit the spaces that use them, but it's very difficult for those of us who aren't AUDH to always understand WTF people are on about.

I know I'm a deep thinker, who's uncomfortable with binary answers, choices and rules based thinking and black and white thinking in general, I guess some people read what I've posted and think 'WTF's she on about now, I can't be bothered to read all that, why can she just say it with a meme and a couple of emojis?' I see patterns in a lot of things, the story behind the story, where things that seem very different are expression of a similar thing and sometimes the same thing, it's very rare for me to think in a straight line, to me the world is like a jigsaw where I can see the whole picture and at the same time move pieces around, this happens in different dimensions and levels too, nothing is vertical or flat and without texture.

Having had training in both counselling and a history degree has really taught me to ask questions of questions, to look under the surface of whats presented to me and to say the unpleasant, the deviant, the socially unexceptable, to name the game being played and ask others if they see the game too and do they really want to play it? This is uncomfortble for many people, but once I've seen something like that I can't unsee it, I can't not say what I see, people of a more binary type of thinking or an analytical type might look and think something like ' the ladders falling down, all the bits are on the floor, must deny the collapse and put the ladder back together'.

I think basically what I'm trying to say is that AUDH is the dominant type here and that why I often feel that I don't fit in, we literally see the world differently, through different lenses. But is it just me that feels like this? Can we make a bit more effort to be accomodating of different types? I wonder if other people come here and are put off because they don't feel reflected in what they read here how responses are framed?

I think theres also a danger that AUDH is seen as the only type or even the most common type of autism and all services end up geared towards AUDH and those of us who express differently are excluded again, are doubly stigmatised by an NT world that dosen't understand and dosen't really want to and an ND world thats seems largely AUDH and is just relieved to have finally been recognised. Included in this exclusion is those of us who don't cope well with the digital world, the dominant narrative being that autistic people don't like talking to others so if we do everything digitally then thats ok. So whilst you lots are happily chatting away using memes and emojis, theres others of us sitting down with a piece of paper, a fountain pen and ink from a bottle, trying to set down our thoughts.

  • This is just a somewhat different perspective that might be helpful, or not, for you.

    I think first that even if you, or anyone else, is a deep thinker, it is worth to remember that:

    1. Many will have different cognitive styles, strengths, and weaknesses (spiky profiles),

    2. That maybe we are deep thinkers in one area and less so in others. For example, I tend to be okay at computers. I'm bad at other areas. And even then , that is just what I think , but may not be what others think,

    3. That, given that the forum isn't extremely crowded, we don't have as many overlaps of topics, hence there is "less of my topic" (special interest or otherwise),

    So in my view the solution is to change the framework, or perspective, or relation of oneself to the forum, in a way that includes others. For example:

    4. Personally, I have concluded that what unifies most of us here is that we have suffered more than others elsewhere. So maybe reframing how you relate to the forum can help feeling better and enjoy the time here more, e.g. through compassion etc.

    5. This is more personal, but I find most people here interesting, each has a unique individuality, just like every being, and it is nice.

  • Hi  

    I read your post with interest (and am desperately doing my best to avoid adding emojis in my response :-) - oops sorry failed!).  I appreciate your thoughts and the work you have made in putting sharing them - thank you.

    so that ":-)" reveals me as one who also can't resist saying unpleasant, the deviant and the socially unacceptable to others to - hopefully the rest of what I write outweighs any offence .

    Over and over again I have listened to a podcast about Plato's Republic - hehe being a bit slow on the uptake... The last few times I listened to it I keep getting caught on to an "The Allegory of the Cave" that is used in it.  As I understand it, according to the allegory, people are chained by their necks and ankles facing the empty wall of the cave - the things they see and believe as reality are only the shadows that reality sheds. then someone escapes the cave and gets experience of what is really going on outside (not a pleasant experience to start with) and they don't get a particularly welcoming response when they go back in the cave and do their best to explain what is going on... that's from a book that's 3000 years old.  I can't see any evidence that people have changed a lot in the intervening period myself.

    Considering myself as being one who because of the nature of autism maybe already has a good grasp of "shadow play" by adapting my mask to throw a suitable shadow.  I have to really work hard not to want to explain the shadows that others are casting themselves unless they ask for me to, and even then have to be very careful and adaptive about how I do so.  Comes with the autism? Maybe when I can't restrain myself I can't help but point out the shadow game others play too.  Perhaps this is the origin of failings in empathy that I might personally be accused of.

    With respect to the dominant narrative of autistic people not liking talking to people that you suggest is present and that everything done digitally is OK...  Well, a flat monotone (unless I actively choose to do otherwise) and lack in eye contact (unless I make myself do it) can be a bit of a social handicap for me personally - that doesn't seem to me to necessarily be a problem when using writing so much.  The emoji's when i personally use them are a shorthand for making up for me failing to clearly get across my emotional context maybe when I am doing so?  At the risk of being particularly pedantic I wonder if there is a clue with the difference between talking to and talking with others.  Talking "with" as opposed to "to" others seems to me to be a skill not so regularly practiced as one might hope for it to be among such advanced creatures as human beings.

    Best wishes

    Phased

  • I have emailed the staff through contact us page some websites they might want to add to the service support. It is from other borough's that it is free for any to use for anyone.

  • Your posts regarding ADHD are starting to make me want to stop coming here myself. At no point in life have I ever felt like a god and I generally never comment on communication styles. I am making an exception right now because 1. I feel like you are starting to get personal to people and 2. You are contradicting your own point. I accept people's differences but I will not accept being told that I am a problem simply because I also have an ADHD diagnosis.

    I hope you don't stop posting because of this as I've always valued your contribution.

    I think others might be put off too but we need to remember that this is just one person's opinion and not, as far as I understand, a general view.

    I only have an autism diagnosis and I don't consider there to be a dichotomy here.

  • I do feel othered
    the High Energy, rapid paced emotional short hand loving AUDH people.
    I guess some people read what I've posted and think 'WTF's she on about now, I can't be bothered to read all that, why can she just say it with a meme and a couple of emojis?'
    and an ND world thats seems largely AUDH
    So whilst you lots are happily chatting away using memes and emojis, theres others of us sitting down with a piece of paper, a fountain pen and ink from a bottle, trying to set down our thoughts.
    I think we're better than this, we need to be better than this, Autism needs its thiinkers, it's intellectuals, its philosophers, if we don't then how do we meet the increasing challenges to our existance from the outside world, from sections of the political right, journalists and commentators?
    why do we have to cater for the lowest denominator all the time?

    Are you being othered CW, or othering?

    This is just a small example.

    I have personally found this thread patronising with your assumption that you are a 'deep thinker' and the rest of us, from what I understand of your words, are not.

    There has to be some middle ground on this.

    I think I too had concluded that nobody else really liked thinking, making connections from seemingly random threads across time and space, inner and outer. To me its all the Anglo-Saxon/Norse concept of The Wyrd, the warp and weft of the universe, multidimensional and wonderful, if we follow the strands we see what was and whats possible, how it all links what threads cross where and when and how strongly.

    I think we build deep mind spaces by not being embarassed to start posting them, obviously some will drop off the edge into nowhere and others might only be a couple of posts long, but the possibilities are there, if we choose to take them.

    Why don't you create what you believe to be 'deep minded' threads and see if others are actually as 'deep minded' as yourself?

    Maybe some people create the threads that interest them most.  That doesn't mean they are 'shallow minded' or even 'medium deep minded' or any other value you would like to put onto our thinking abilities.

  • I really do understand the feeling of being misunderstood. But I'm struggling to understand what you want right now. You seem to want people to cater to you by not using emojis etc but then are questioning why we have to cater to the lowest denominator? I don't think we should be referring to people as the lowest denominator. How does somebody that gets upset by posts feel when they read that? You are saying we all need to stand together yet you have written multiple responses putting other people down.

    We are all autistic and understanding other people and their point of view can be a difficulty. 

    Your posts regarding ADHD are starting to make me want to stop coming here myself. At no point in life have I ever felt like a god and I generally never comment on communication styles. I am making an exception right now because 1. I feel like you are starting to get personal to people and 2. You are contradicting your own point. I accept people's differences but I will not accept being told that I am a problem simply because I also have an ADHD diagnosis.

    What you seem to be saying is people that are autistic should think like you and if they don't then they are doing it wrong.

    Masking is hard. I understand that. But there is a difference between communication styles because of autism and insulting people and their differences.

    If the forum is starting to effect you like this, maybe a little break is what you need. That isn't to say you are not welcome here are valued here, you absolutely are. But your interpretation of the forum is obviously having a negative impact on you right now.

  • Sorry Leveller most of them haven't, they've made me realise that I mask heavily to come here and I do feel othered and misunderstood, I feel a lack of willingness to understand too. Your post makes me feel theres a point to me actually being here as do some below.

    I realise I'm getting increasingly anxious about coming on here, the need to mask, the discomfort that comes with having to tone down and dumb down to the point of feeling inauthentic. Will I find a string of emojis instead of an answer or a post so littered with them as to make it incomprehensible to me. There are so many things I want to say, to discuss and to share that I dont' feel able to here, especially discuss, the site is so heavily moderated that certain subjects and topics aren't allowed to be discussed in case someone gets upset or misinterprets, why do we have to cater for the lowest denominator all the time? 

    We do need to stand together, but we don't and we can't, certainly not if we're not allowed to discuss those differences and what they mean, when the structures in place either arn't there or actively obstruct us being who we are or talking about things we need or ant to talk about. This site does feel like its geared up for those who have ADHD as well as autism and only certain communications styles are acceptable and the gods forbid we step outside of those, it feels like we might be branded as heretics or something.

    I'm not sure how much longer I can continue being in a space were we're not allowed to disagree, where threads are a series of statements, only vaguely connected to the OP. I think we're better than this, we need to be better than this, Autism needs its thiinkers, it's intellectuals, its philosophers, if we don't then how do we meet the increasing challenges to our existance from the outside world, from sections of the political right, journalists and commentators?

    I do enjoy a lot of the lighter hearted thread and contribute to them, but feel increasingly alienated and the strain of having to wear a thick mask in the one place where I'm supposed to be safe, authentic and unmasked is really painful and upsetting and I'm unsure of how much longer I can keep doing it for.

  • Sorry that you feel like this,  

    I often don't feel like I belong here

    I hope our responses have made you feel less isolated.

    I know just how diverse we are on here. For example, I am both autistic and ADHD and I recognise what I see as tidal flows and amusing/maddening contradictions within myself.

    I read things on here and smile at the similarities with my own experience but also get fascinated by the differences. As others have written, the autism (and ADHD if we have that) manifests in different ways for each of us, inside and outside.

    We have much more in common than that which divides us. It would be a shame if we started to 'other' based on diagnostic labels or subtypes. We need to stand together.

    As you'll know from my other posts, I have a complex relationship with the digital world. I see how it connects, simplifies and enables but also how it atomises, excludes and degrades. I am fortunate (practically) that my career led (required) me to become adept at using digital devices but I look back fondly at a time before mass computing.

    I love longform communication so would be interested in sharing thoughts on deeper topics in threads on here.

  • I am sorry

    There is really no need to apologise, R.

    On all the threads, you are only trying to help and gently giving your own views and advice.

    You should be able to do this without being vilified.

    The following comments are not regarding you, RachelO:

    We all have different communication styles (and difficulties) and being annoyed with someone because they communicate differently or appear to not take into account something about you, when they don't know you personally, isn't helpful.

    We don't know what is going on in the lives of those we speak to, or how vulnerable they are.

  • I am sorry,  I didn't see your post until today. I mentioned about the help that some borough's have online because anyone from anywhere can read it. For example some of the same help my OT clinician gave me is available online on the borough website. It is all about managing autism. They just put it online it seems but I had a tailored one. It can still be useful to some people from anywhere. I couldn't show my own borough so mentioned another. Also, it is some help, it may not be sufficient, but I thought it may be better than nothing in some cases.

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  • Sorry RachelO,  I realise this may upset you, but I feel your replies have been totally dismissive of what I've been trying to explain on this thread. I feel even more alientated now and like I don't really belong here. You were fortunate enough to have gold standard treatment and seem to believe thats what we all get, we don't, most of us really struggle to access any services at all, in any format. Directing me to digital services, that you know I have problems with feels especially dismissive, in fact it feels like the way I get treated in the NT world!

  • What would be the point of me checking a London borough when not only do I not live in London, but I don't live in England either? As I have problems accessing digital materials looking stuff up online probably won't be a very effective method for me would it?

  • The whole of North Wales is a bit of a black hole for autism, we have one service, who I think are a complete waste of time and public money, they're at the other end of the country to me anyway and come to Bangor once a month for the most autism unfriendly drop in I could imagine. I dont' think they cross the bridge, a lot of services don't and many services stop at Llandudno and expect everyone to go there

  • They had topics on burn out, stimming and masking, mental health, relationships and autism basics. I I stayed a short while in the session, as I was registered they sent me the hand out for each session in pdf in email after the session so I still have them and found them quite useful and have shared them with some people. I wasn’t aware that they had any other group offline meetings for people who didn’t use online.

    My borough has got some helpful information online  how to try and manage autism. I don’t know if you have checked your borough’s website for autism. You could check another borough say Kensington and Chelsea in London and see if they have information there if interested. I don’t live in that borough but they are for example quite a wealthy borough.

  • Sorry to hear about your eating disorder, but so glad to hear you were treated so well and I have to say that I think you were very lucky to be in a hospital that took such a holistic view. I was never offered anything like that and North Wales has almost no support for autism, I've no real idea what your score of 2 means, except that it's in the middle of 1 and 3.

    An online group in your borough, thats great for people who are able to use digital commuications and groups, do they have help for those who find digital difficult?

     I actually saw an OT this afternoon, I was a bit misdirected as after counselling, but it was a good meeting and she was horrified that I was diagnosed and told to get on with it, like I had been for the previous 50 years. She's going to try and see what help is available for me, but it mostly seems to be the group I saw before who were totally useless.

    In the course of our conversation about autism, I did say that I felt a lot of the help is geared towards those with adhd and autism and not autism alone, she agreed that this is becoming more common and that its unhelpful for those who are just autistic as our needs are different and that much of the help is geared more towards adhd and less towards autism. What have been the topics covered and have you found them helpful?

  • I went to hospital for an admission for an eating disorder in a NHS teaching hospital in 2015. They do autism research to and a pyschologist came in and did the ADOS test with me and spoke to my dad and said I had something. From then they tailored my treatment in that hospital for an eating disorder to keep in mind I had autistic traits. They said I still needed to go for an official diagnosis. There is work called the  peace pathway  for eating disorders and autism.The hospital I went to was very supportive of the peace pathway.

    I did officially get diagnosed later on and because in sensory I scored 2 which is moderate after an OT in the NHS OT called and offered me 12 sessions for sensory support because of the moderate need in that area. It could go from 0-3 in each question asked under different categories. That category was for repetition and stereotyped interests. My borough went onto do a group online covering different topics to help manage autism.

  • It’s interesting hearing your experience of AuDHD and diagnosis disclosure.

    I have told very few people about my ASD diagnosis and some of those people responded negatively (We’re all a little autistic etc.) I have told only one person about AuDHD or ADHD. I would likely be the inattentive type of ADHD. On reflection, having listened to peoples’ experiences, I would be unlikely to disclose it further except on this site.

  • In fairness in real life, I would never introduce myself as AuDHD, it's just easier to type. I don't tend to always put that online here either. I bring up my adhd when it seems relevant. Sometimes I might just be pointing out that it may not be my autism that causes that but my ADHD. 

    I'm not brilliant at telling people about my diagnosis in real life anyway to be honest. My autism is far more obvious than my ADHD a lot of the time so I think that's what people generally notice and remember.

  • I'm not uncomfortable with my diagnosis and I was diagnosed at the age of 50, 14 years ago, long before most of the tests that people here were diagnosed under were around. This does lead to some confusion as I was told yes, you're autistic, or aspergers as it was a diagnosis at the time and left to get on with it. This does mean I ask a lot of questions about the terms that those whowere later diagnosed mean, I sometimes wonder if I could have had a more nuanced diagnosis if I was diagnosed now.

    How were you treated as autistic by the NHS? I thought there was no treatment?

    I'm a bit wary of stuff from America, it doesn't always travel well and they have a habit of coming up with multiple diagnosis and "disorders" that I'm not sure are real, like PDA, I mean where the line between not wanting to do something and consistently refusing and it being a pathology?

    I'm glad we can talk about our differences too, isn't it interesting that those with adhd and autism feel they're a minority here, just as me and some others do for "only" being autistic? I think this could be a really good area for more conversation, analysis and discovery.

    I don't get selfies either, but then I sent a childhood of standing in front of things with my Mum being photographed by my Dad.

    Could we have a room or something for deep thinking?